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Preventing mitochondrial disease in future generations: New techniques may stop the transmission of faulty DNA from mother to child.
- Cristy Balcells RN MSN
In the past year, the mitochondrial disease community has witnessed the closing of five clinics specializing in the treatment of mitochondrial disorders. While these clinic closures all have occurred for slightly different reasons, it has become clear that treatment of mitochondrial disorders, with their varied presentations, diagnostic difficulties, and limited available treatments, is not considered a priority at academic centers across the country.
This is a joint teleconference between MitoAction & UMDF for the benefit of the mitochondrial disease community.
Mitochondrial disorders are characterized by complex presentation of multiple symptoms. Due to a variety of factors, including heterogenity of the disease, erratic symptom presentation and general lack of awareness about the condition, families with mitochondrial disease are more often faced with accusations of medical child abuse than other conditions. Living with mitochondrial disease and serving as one's own advocate impacts the entire family on a daily basis.
MitoAction has joined Patients and Physicians for Rx Access, a coalition addressing the issue of insurance cuts to compounded medication coverage.
(From Dr. Stacpoole's Benefunder Research page)